New stats show that over 80% of the people think the Government should be doing more to prevent death sudden deaths in young people

CRY is today calling on the Secretary of State for Health and the UK National Screening Committee to formally acknowledge the scale of young sudden cardiac death (YSCD) in the UK, claiming that current policy and decision-making criteria is based on “flawed data”, putting the lives of hundreds of young people at risk each year.

And, the results of a new nationwide survey1 – launched at the start of the charity’s annual “Raising Awareness Week” – will also show for the first time that 82% of UK adults think the Government should be doing more to help prevent sudden cardiac death in young people. Similarly, 83% of adults questioned think all young people (aged 14 – 35) should be offered cardiac testing via a free, national screening programme.

The new stats will be discussed at the charity’s annual Parliamentary Reception on Wednesday (21 November) where attending MPs will be advised of CRY’s ongoing campaign #MPsupport4CRY. To date, 118 MPs have pledged their support to establish a National Strategy for the Prevention of Young Sudden Cardiac Death in the UK.

Of the 18-34 age group questioned as part of the UK-wide survey, over two thirds (67%) of men and 71% of women said they would like “the opportunity to book in for cardiac screening (with an ECG) before reaching the age of 35”.

When asked, 60% of parents of children aged 14-35 (the current age criteria for CRY’s screening programme) said they would actively encourage their children to be tested.

Of those who were unsure (28%) or said they would not actively encourage screening (just 13%), the most common reason (35%, or one in three) was because they felt their child was fit and healthy and therefore didn’t see the need – contrary to the shocking reality that in 80% of cases of young sudden cardiac death there will have been no warnings or symptoms.

It is widely acknowledged by cardiologists, coroners and key influencers that every week in the UK, at least 12 young (aged 35 and under) people die suddenly from a previously undiagnosed heart condition. In the vast majority of cases, the first sign of a problem will be the last sign and therefore the only way to detect a potentially fatal cardiac abnormality is through proactive cardiac screening by specially trained cardiologists.

CRY firmly believes that every young person should have the choice to be screened and currently offers a national screening service where anyone aged 14-35 can access free cardiac tests. As such, CRY’s expert teams currently test around 27,000 young people every year – with community screenings across the UK accessible in just 3 clicks via www.testmyheart.org.uk

Yet, to the dismay and anger of the 1,000s of families who have been so tragically affected by the sudden and seemingly inexplicable cardiac death of a child, partner, sibling or friend, the National Screening Committee continues to dismiss the scale of YSCD as “tiny” and “rare”.

Dr Steven Cox, Chief Executive of CRY, comments; “These new stats, reflecting public opinion, reinforce our campaign to make the Government sit up and acknowledge the massive impact young sudden cardiac deaths have on our society. It remains of huge concern to us that current UK policies are still contradictory, with guidelines based on incorrect assessments of the incidence, methods of diagnosis and positive management of cardiac conditions in young people.

“That’s why cross-party support for a new national strategy is so crucial, ensuring that the guidelines and policies to prevent young sudden cardiac death are consistent. And, the first stage of such a strategy must be to correctly acknowledge the incidence of these deaths.”

There also appears to be a significant misunderstanding of the possible causes of sudden cardiac death with a staggering 40% of people (rising to 52% among 18-25 year olds) incorrectly believing that an unhealthy lifestyle could be a major cause of these tragedies.

Dr Cox adds; “Crucially what this survey has flagged up is there is still a need for organisations such a CRY to continue educating young people and their parents about any misconceptions about cardiac screening and essentially, who is at risk. As we see all too often reported in the media – and as we hear from the hundreds of calls we receive every year from bereaved families after a tragedy, unable to comprehend how this could have happened to their young, vibrant and physically active family member – these young people are in the prime of their lives.

“And, whilst screening will not identify all those at risk, in Italy, where it is mandatory for all young people engaged in organised sport, the incidence of YSCD has decreased by 90%. The facts speak for themselves and Internationally acclaimed data such as this can no longer be ignored.”

Encouragingly, 62% of respondents told CRY they were aware that an ECG could detect the majority of conditions which can lead to young sudden cardiac death. An ECG is currently recognised as the “gold standard” test for identifying cardiac abnormalities and signposting a need for further, often urgent, investigations such as echocardiogram scanning, MRI and in some cases, genetic testing.

Professor Sanjay Sharma, Professor of Inherited Cardiac Diseases and Sports Cardiology at St George’s University, London and CRY’s Consultant Cardiologist, concludes; “Our screening recommendations are there for a reason and I believe it is important that young people are offered a simple cardiac test between the ages of 14 and 35. Such tests are offered by Cardiac Risk in the Young and our experience has shown that at least 1 in 300 apparently health young people harbour a cardiac condition capable of causing sudden death. Most have no warning symptoms.

“I am often asked to present the latest research about young sudden cardiac death. One of the most important points I stress is the number of “life years lost” when a fit and healthy teenager dies suddenly – and the fact that these deaths can be prevented. We know what the tests are, they are available here and now and, perhaps most importantly, CRY is training up a new generation of cardiologists who can interpret these tests with more expertise and accuracy than has ever been seen before.”

Also speaking at the Parliamentary Reception will be inspiring teen campaigner, Abby Lang, who has single-handedly encouraged all 59 of Scotland’s MPs, the Leader of the Labour Party, Jeremy Corbyn, Diane Abbot, Sir Vince Cable, Heidi Allen and the SNP Westminster Leader, Ian Blackford to sign the pledge. Earlier this year (June 19), 18-year-old Abby was invited to deliver the “Time for Reflection” speech at the Scottish Parliament on the subject of young sudden cardiac death.

1A survey was conducted among 2,001 UK adults aged 18+. The research fieldwork took place between 18th-22nd October 2018. Atomik Research is an independent creative market research agency that employs MRS-certified researchers and abides to MRS code.